Narrative Medicine

Narrative Medicine Monday: Leaving the Body

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Author Lisa Knopp shows how we can be drawn to the presence of a body even following death in Hospital Drive‘s “Leaving the Body.” After her mother dies, Knopp lingers in her hospice room, asking to stay as a woman enters to wash her mother’s body and ready her “for the people who are coming to pick her up soon.”

Knopp initially wonders about “the point of bathing my mother, since her body will soon be ash.” The nurse’s aide speaks to Knopp’s mother as she wipes her face and arms. Knopp finds this “comforting, this informing my mother of what’s about to be done to her, since I can feel that something of her is still here.”

When the aides remove the woman’s gown, Knopp is filled with wonder at her mother’s naked body. “Even though she would feel shamed by my scrutiny, I want to savor and memorize the details.” This body holds memories for Knopp, the substance of a mother-child relationship, connection: “I know their shape so well: large knee bones, slightly bowing calves, like those of her mother, and thick ankles. Just below her right knee on her inner calf is a blue vein, an inch or two long that has been there as long as I can remember.”

In these moments right after her mother’s death, Knopp finds herself “starving for her physicality” and tells the aide she’d like to touch her mother. She kisses her forehead and strokes the top of her head and wonders, “What is it that I’ll be missing now that my mother’s heart has stopped beating, and she’ll soon be turned to ash?” Her mother has died, but Knopp is still drawn to her physical body, the familiarity of her mother’s form that will cease to exist. Knopp shares that her greatest regret will be that “we didn’t spend more time in each other’s physical presence” and that this final sponge bath is her “last chance to see and touch and smell my mother, flesh of my flesh, my first home.”

Knopp recalls all of the beautifully mundane things she and her mother chatted about on the phone, though they rarely discussed her cancer or the grander questions Knopp yearned to ask her dying mother. The loss Knopp highlights in her essay isn’t so much about the flesh itself, but more about her experience of her mother that was contained in that body: her “voice, words, thoughts, laughter, and silences.”

Knopp reflects on the waning importance of physicality in our modern world, how the dean of her college encourages faculty to have more screen time and less face time with students, how so many interactions with friends are via social media and not in person.

At the end of the essay, Knopp combs out her mother’s hair, braids it with care and cuts a lock of hair as a token. Knopp is unsure what she will do with the lock of hair, but the gesture seems satisfying in the moment, keeping “more than just memories of her body” before they wheel her away.

Writing Prompt: If you’ve been present with a dead body, either a loved one or a patient, what did you experience while in that space? Was it difficult? Healing? Both? Did you feel drawn to touch the body, as Knopp did? What are your thoughts about Knopp’s observation that we spend significantly less time face-to-face? How do you think spending less time in the physical presence of others might affect us? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: On the Eve of My Mother’s Dying

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Writer Peggy Duffy’s flash nonfiction piece in the latest issue of Brevity, “On the Eve of My Mother’s Dying,” is a snapshot of her mother’s last days on hospice.

Duffy opens with the assertion that those who work in hospice “coordinate.” In my experience, both as a physician and as a family member, caring for those at the end of life, this verb rings true. The hospice people coordinate all the details of transport and durable medical equipment and adjustment of medications for comfort and, ultimately, Duffy realizes, “my mother is actively dying, and they strive to coordinate that too.”

Duffy’s father is upset they are not coaxing his wife into eating, despite her being unresponsive. The social worker explains to him “that unless my mother opens her eyes and asks for food, unless she can swallow, she cannot eat.” Duffy understandably struggles with her father’s resistance to accepting why they can’t give her mother water to drink: “Not long after I leave, he calls. Why won’t they give her water? She can’t swallow. What about on a teaspoon? You have to swallow even the tiniest amount of water. How can she survive without water? (Pause) She isn’t going to survive. I remind him she signed an advanced directive years ago when she was still lucid and knew what she was signing.”

Duffy is surprised at the stretching of time in the final days of her mother’s life: “I can’t work, can’t think, can’t sleep. I never knew dying could take so long.” If you’ve cared for a loved one on hospice, did you experience the same distortion of time as Duffy?

The piece ends with a touching, and surprising, kiss from Duffy’s mother: “Something long dormant stirs beneath my chest where my heart lies. I lay my head on her chest where her heart still beats.”

Writing Prompt: Have you had difficulty explaining any aspect of end of life care to a spouse, child or parent of a dying patient? Often loved ones have discussed clear wishes of what they would like done, and not done, when nearing the end of life. When it comes time to actually carry out actions according to these wishes though, this still can remain a painful process. Have you experienced this first hand? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: In Life’s Last Moments, Open a Window

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British physician and author Rachel Clarke advises in The New York Times that to care best for our terminally ill patients we should, “In Life’s Last Moments, Open a Window.” Dr. Clarke relays the story of a patient dying of cancer who was nonverbal but clearly in anguish. “We tried talking, listening, morphine. His agitation only grew.”

Clarke initially questions if the “sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance.” Instead she finds, as in the case of her patient with tongue cancer who merely wanted his door opened wide to the adjacent garden, many patients develop an “intense solace… in the natural world.”

It is the song of a blackbird outside her window that gives one of Clarke’s breast cancer patients perspective that even “[c]ancer is part of nature too, and that is something I have to accept, and learn to live and die with.”

Clarke shuns the idea that end of life care needs to equate to a “dark and dismal place.” Instead, she contends that what should dominate hospice “is not proximity to death but the best bits of living.”

Writing Prompt: Clarke’s patient Diane notes that cancer is a part of nature. What are the implications of this statement for you as a medical provider, as a patient, as a loved one? When you’ve been ill, have you found solace in nature? Write for 10 minutes.

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Narrative Medicine, Writing

Published: Nine Lives

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I’m thrilled to announce my essay “Fired” appears in a new book, Nine Lives: A Life in Ten Minutes Anthology, forthcoming from Chop Suey Books Books in June. Valley Haggard, of Life in 10 Minutes, is the mastermind and editor behind this exciting project. I can’t wait to get my hands on this compilation! You can purchase your own copy of Nine Lives, which is made up of short essays that follow the “ages and stages of life” online on June 14 from Chop Suey Books.

My piece that appears in this book highlights a moment I shared with my grandpa “Gar” during the last days of his life. In honor of Narrative Medicine Monday and this short personal piece, today’s writing prompt will focus on hospice.

Writing Prompt: Have you spent time with someone on hospice or near the end of their life? What do you remember the most? What have you forgotten? If you’re a medical provider, how does caring for someone as a medical professional compare with caring for a loved one at the end of life? If the experience was overwhelming, try focusing on the details: a glance, a thought, a smell, an item, a phrase. Write for 10 minutes. 

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Narrative Medicine

Narrative Medicine Monday: When Patients Mentor Doctors

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“When Patients Mentor Doctors: The Story Of One Vital Bond” tells of physician Aroonsiri Sangarlangkarn’s longitudinal relationship with a patient she comes to call a friend. The bond between them affects her views on what can be gained through understanding patients on a more personal level.

Sangarlangkarn first meets Roger as part of a medical school program that matches up aspiring physicians with geriatric patients who provide mentorship on medicine from a patient perspective. She then encounters him again after she has finished her training and he is hospitalized under her care. She reflects on the value of her deep knowledge of his personality and history.

I liked reading about Sangarlangkarn’s own lengthy description, written years prior as a medical student, of the patient’s social history. It included intimate details such as Roger’s parents’ names, his boyhood aspirations and his favorite board game. When I was a medical student I remember taking a very detailed history of a woman who was in the hospital for treatment of her malignant tumors. I spent over an hour with her, just chatting with her about her history. No physical exam, no review of medications. The final typed up document I turned into my advisor was over two pages long. Now, as a busy primary care physician, I, like Sangarlangkarn, can see how the emphasis on efficiency causes time constraint that makes it difficult to have meaningful patient-physician conversation that could contribute to helpful personal knowledge. Sangarlangkarn laments that “our interactions with patients have become so regimented and one-dimensional that we no longer get to know the multifaceted person outside the hospital.”

What do you think about Sangarlangkarn’s suggestion regarding the value of patient home visits? This is often done for patients in hospice care or who are unable to physically get to a clinic. Home visits because of the time they require seem much more costly to the system but Sangarlangkarn argues that the value – the ability to get to know the patient on a different level – provides invaluable information. She writes: “To effectively provide care for someone, it’s important to learn who they are, what they eat, how they breathe.” She, in fact, due to her detailed knowledge of the patient, is the only one who eventually can get him the end of life care and support he needs.

Writing Prompt: Think about a time you visited an ill person at home, whether that be an apartment, house or adult family home. Describe what you saw, what you smelled, what you talked about, how you felt. What do you think can be gained by entering into a person’s living space? Alternatively, consider a patient you’ve known for years, maybe decades. What do you know about that patient because of a longitudinal relationship that might be of benefit to you if you had to deliver bad news or discuss different treatment options or medications? Write for 10 minutes.

 

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